Disability

Arriving at a health centre but not being able to physically access it. Needing information about your health but not being able to read it. Asking your doctor for family-planning advice but having to have the advice translated into sign language by a third party, resulting in a lack of confidentiality and privacy. These are only a few of the challenges faced by the 1 billion people who live with disabilities worldwide when trying to access health-care services. However, people living with disabilities have the same right to health as everyone else.

Disability prevalence is rising, owing to ageing populations and the increase in chronic health conditions, among other factors. Through long-term access to antiretroviral therapy, living longer with chronic HIV is increasingly possible, but may occur alongside other co-morbidities and the risk of disability.

People living with disabilities are at a heightened vulnerability of poverty, legal and economic inequalities, gender-based violence, sexual exploitation and abuse, exclusion from health care and human rights violations, all of which increase their risk of contracting HIV. In western Africa, women and girls living with disabilities may fall victims to harmful myths such as virgin rape—the belief that having sex with a virgin living with a disability will cure HIV—and other sexual violence supposed to bring wealth or power to its perpetrator.

Young people living with disabilities are also at greater risk. Because of the expectation that they are not sexually active, young people living with disabilities are often omitted in discussions about comprehensive sexuality education and excluded from sexual and reproductive health services.

It is within this context that the Governments of Norway and Ghana and the International Disability Alliance (IDA) will be holding the second Global Disability Summit on 16 and 17 February in Accra, Ghana. The first Global Disability Youth Summit will also take place on 14 February, co-hosted by IDA, the United Nations Children’s Fund and Atlas Alliance. 

“Since the last Global Disability Summit, as a result of the COVID-19 pandemic the situation of the most vulnerable groups of society has deteriorated —and in particular, people with disabilities have suffered heightened violence, exclusion and disarray. Our mission is to turn words into actions to realize the rights of persons with disabilities everywhere,” said Anne Beathe Tvinnereim, Minister of International Development, Norway.

Data from sub-Saharan Africa suggest that there is an increased risk of HIV infection of 1.48 times among men and 2.2 times among women living with disabilities compared to those without disabilities. In western Africa, several studies have shown that HIV prevalence among people living with disabilities was on average two to three times higher than among the general population.

“Young people with disabilities, estimated to be 200 million around the world, want tailored health care, inclusive education, access to employment, and better access to new technologies. They are agents of change of their own future—and we stand ready to hear them and support them,” said Hon Kwaku Agyeman-Manu, Minister of Health of the Republic of Ghana.

The COVID-19 pandemic has made the situation worse. Because of interrupted health services and lockdowns, women living with disabilities in particular are suffering acute financial pressure—many are raising children on their own and hence are even more likely to experience sexual violence.

UNAIDS has long advocated for a three-track approach to advance the inclusion of people living with disabilities in HIV responses:

• Disability-specific activities and mainstreaming disability across all aspects of HIV responses.
• The authentic participation and active involvement of people living with disabilities in all elements of programmes.
• Disability-inclusive policies, programmes and implementation strategies that ensure appropriate funding and resources.

Specifically, UNAIDS is advocating for five actions:

• More research and better disaggregated data—the world needs to know and understand the health needs of all people living with disabilities at a more granular level. 
• Adequate funding to be allocated to mainstreaming disability across systems for health and disability-sensitive HIV services. Services need to be accessible to all and respond to the specific vulnerabilities and needs of people living with disabilities.
• The international community must commit to the meaningful inclusion of people living with disabilities and their representatives at all levels of policies and programmes, from design to planning, implementation, monitoring and evaluation. It must also invest in strengthening the capacities of community-based organizations led by people living with disabilities and delivering services to people living with disabilities.
• Policymakers and health providers must guarantee rights-based, people-centred, non-discriminatory health services. Traditional or cultural stigma needs to be rectified by appropriate training and the sensitization of health-care staff around disability.
• Global leaders must address the intersecting structural determinants, such as poverty, exclusion and gender-based violence, that further aggravate the vulnerability of people living with disabilities. Only interventions that end entrenched inequalities and establish more supportive environments can improve the overall health of people living with disabilities and give them a chance of a life lived in dignity.

Ending AIDS without including people living with disabilities is impossible.

“I hope, along with the summit’s organizers, that governments, policymakers and organizations around the world will commit to change and come together to create a more inclusive society,” said Angela Trenton-Mbonde, UNAIDS Country Director for Ghana.

The World Health Organization estimates that, globally, more than 1 billion people (15% of the world’s population) have a disability. Disability is increasing in prevalence due to ageing populations, trauma, accidents and chronic health conditions, including HIV, tuberculosis (TB) and COVID-19. 

Persistent discrimination against and exclusion of people with disabilities, in particular women and girls with disabilities, increases their vulnerability, including their risk of HIV infection. People with disabilities, in particular women and girls with disabilities, also experience barriers to accessing HIV services and are left behind in HIV policy-planning, programme development, service delivery and data collection.

People with disabilities face stigma and discrimination in families and communities, lack transport to health-care facilities and are faced with poor attitudes of health workers while seeking health care.

Since 2004, the AIDS Service Organization (TASO), based in the Mulago Hospital Complex in Kampala, Uganda, has attempted to reach out to people with disabilities. However, it has had limited success due to the complexities of community-based care.

In 2016, in response to these challenges, Positive Women with Disabilities (POWODU) was formed out of TASO to pay special attention to people with disabilities living with HIV in order to reduce AIDS- and TB-related deaths, stigma and discrimination and to promote sexual and reproductive health and rights.

POWODU is headed by Betty Kwagala, a formidable advocate, trainer and woman living with HIV who has 25 years’ experience serving as a counsellor at TASO Mulago. Ms Kwagala is a respected and well-known figure in the community, who has uplifted the lives of many people living with HIV in Uganda.

POWODU, in partnership with TASO Mulago, reaches out to people with disabilities in the urban districts of Kampala, Wakiso and Mukono. According to TASO’s client register, there are more than 13 000 people with disabilities in Kampala and Wakiso enrolled into HIV care. Seventy per cent are women and the majority are homeless.

HIV testing and TB screening are integrated into every POWODU community outreach. “The services are always offered near to where people with disabilities reside because of mobility and transport challenges,” says Ms Kwagala.

If a client tests positive for HIV, POWODU offers immediate initiation of HIV treatment, as per the Ministry of Health guidelines. If a sputum TB test is positive, POWODU will refer the case to the main laboratory for further investigation and proper management. POWODU will then follow up, and, with the support of a TB focal person, arrange pick up for the client in a TASO van to escort him or her to receive the appropriate health service.

Other services offered on site by POWODU include sensitization on adherence to both HIV and TB treatment, prevention of HIV, TB and COVID-19 and accurate information on sexual and reproductive health and rights among people with disabilities.

“The COVID-19 pandemic has led to clients who have been lost to follow-up because they are homeless or reside in informal settlements. The lockdown caused more challenges, such as lack of food and a significant disruption to the usual activities that give them some income, such as begging,” says Ms Kwagala.

During the COVID-19 lockdown, UNAIDS supported 200 people with disabilities living with HIV with food rations, personal protective equipment and personal hygiene kits. It also supported a project to equip 40 people with disabilities with skills on how to identify income-generating activities. They were provided with popcorn-making machines and groundnut grinders.

TASO members were provided with megaphones and sensitized members of their communities on HIV, TB, COVID-19, sexual and reproductive health and gender-based violence.

“POWUDU and TASO have shown remarkable resilience by putting people at the centre during the COVID-19 pandemic by ensuring that people with disabilities living with HIV are safe and not left behind,” says Jotham Mubangizi, UNAIDS Country Director, a.i., for Uganda.

Worldwide, there are 1 billion people living with a disability. The majority live in low- and middle-income countries and face multiple barriers, leading to inequalities. They are overrepresented among people living in poverty and among key populations affected by HIV and have lower participation in social, economic and public life and have lower economic, health and education outcomes. People living with a disability are also often left behind by HIV responses.

Between 2016 and 2018, biobehavioural surveys of people with disabilities were undertaken in Burkina Faso, Cabo Verde, Guinea-Bissau and Niger, while a broader biobehavioural survey was conducted in Senegal. They found that HIV prevalence is on average three times higher among people with disabilities than it is among the general population. In Burkina Faso, Guinea-Bissau and Senegal, women with disabilities were considerably more likely to be living with HIV than men with disabilities.

The many crises, wars and natural disasters around the globe are leaving women and adolescent girls facing a significantly heightened risk of unwanted pregnancy, maternal death, gender-based violence and HIV, says a new report from the United Nations Population Fund (UNFPA).

The State of world population 2015—Shelter from the storm: a transformative agenda for women and girls in a crisis-prone world is a “call to action” to meet the needs and ensure the rights of tens of millions of women and girls caught up in the turmoil of conflict and disaster. More than 100 million people are now in need of humanitarian assistance, more than at any time since the Second World War.

Although remarkable progress has been made in providing women and girls with humanitarian services in the past 10 years, not enough is yet being done to address their particular vulnerabilities, the report argues. It highlights how, for example, their risk of HIV infection is increased and how this heightened risk should inform programmes and assistance. Women and girls experiencing humanitarian crises often face sexual and gender-based violence, including rape, which is a risk factor for HIV transmission. Other factors experienced include trafficking, transactional sex and sex work.

Access to HIV prevention and life-saving treatment services can also be significantly reduced or disappear completely in times of crisis. The availability of medicines for the prevention of mother-to-child transmission of the virus is often severely disrupted. In addition, women and girls with disabilities face extra vulnerability to HIV in crisis situations, with even more limited access to services and information.

Shelter from the storm sets out concrete ways in which vulnerabilities can be addressed. It refers to an internationally agreed raft of essential reproductive health services and supplies that should be available from the start of any crisis. This basic package includes programmes to prevent sexual violence and manage the consequences of it, reduce HIV transmission, prevent maternal and newborn death and illness, and integrate sexual and reproductive health care into primary health care.   

Opportunities may emerge from crisis too, says the report. The example of HIV is cited, with well-run camps with sufficient resources enabling displaced people to have enhanced access to services.

There is also an emphasis on moving away from simply reacting to crises as they emerge and embracing a pre-emptive approach that promotes prevention, preparedness and resilience. The report argues that people who are healthy, educated and have their human rights protected are likely to have better prospects in the event of a disaster. 

Anywur Mayan took her first HIV test two years ago. A health worker came to her house in rural Jonglei State and briefly explained that he was checking her for a virus. He pricked her finger and drew some blood. A few minutes later he told her the test had come back negative and left.

She did not really learn what HIV is or how it is spread until early June this year, after she had moved hundreds of miles from her Jonglei home to escape fighting there. Her new settlement Nimule—a border town near South Sudan’s border with Uganda—is safer, but has much higher HIV prevalence.

Behind there, there is nothing,” said Anywur, pointing in the direction of Jonglei. “Our houses, our belongings, they were all destroyed.

Fighting broke out in the South Sudanese capital, Juba, in mid-December and spread rapidly across nearly half the country. The United Nations Office for the Coordination of Humanitarian Affairs estimates that tens of thousands of people have been killed and more than 1.7 million have fled from their homes since December 2013—about 1.3 million displaced internally and 448 000 seeking refuge in neighbouring countries.

Raising awareness

Anywur, with her husband and infant son, set out in January for Nimule, where the HIV prevalence—estimated at 4.4%, according to the 2012 Antenatal Clinics Surveillance Report—is well above the national average of 2.6%.

In Anywur’s new home in Nimule a collection of local organizations has taken on the task of raising awareness about HIV. Anywur said she only found out what HIV is when a team of community educators gave a detailed presentation about the virus with the aid of information, education and communication materials created by the South Sudan AIDS Commission (SSAC) and UNAIDS.

Where we came from, this kind of education, it is not there,” she said.

But local activists and health workers said they still have thousands more people they need to reach and not enough resources to do it. At the same time, the new arrivals add a layer of complexity to the work they were already doing in the community.

HIV services

The highway connecting Juba to Uganda and the rest of eastern Africa cuts through Nimule, which hosts the country’s most active border crossing. Overloaded trucks rumble through the town at all hours, carrying fruits and vegetables, mattresses and anything else that can be sold in Juba’s markets.

Like many border towns, Nimule has its share of sex workers and their clients, especially long-distance truck drivers. The 2013 South Sudan Global AIDS Response Progress Report estimates that 62.5% of all new adult HIV infections in the country last year arose from sex work, the majority being clients of female sex workers.

Before the fighting broke out, Patrick Zema, Nimule Hospital’s HIV testing and counselling supervisor, said they were making significant progress in increasing awareness about the virus, reducing stigma and linking people to services. The hospital currently has 1 300 clients enrolled in antiretroviral therapy.

But now they are starting from the beginning with the displaced communities. “They come and they fear to test their blood,” said Pascalina Idreangwa Enerko, the chairperson of the local Cece Support Group of People Living with HIV, who attributes this behaviour to a combination of a lack of knowledge about the virus and stigma that comes with an HIV-positive diagnosis. “Thanks to the health education provided, they come out. It is important that they know their status.

Since April, Cece has teamed up with two community-based organizations—Humans Must Access Essentials (HUMAES) and Caritas Torit—to do near-daily mobile awareness-raising campaigns within the far-flung displaced community.

The community mobilizers begin with an hour-long presentation on HIV awareness and prevention. Then they encourage people to visit different stations, including one for paediatric consultations, a free drug dispensary and an HIV testing centre.

Reena’e Awuor Ondiek, Caritas Torit’s HIV counsellor, said her table was not popular when they first started in February, but she has noticed a change in people’s attitudes as she has made repeated visits to the same communities.

The programme has also helped address one of the other major challenges created by the crisis. “The conflict moved people from one place to another and interrupted follow up,” said Habib Daffalla Awongo, SSAC’s director general for programme coordination. “Some patients have been lost within host populations.” During their community visits, a Caritas team has already located people who stopped treatment as they fled the fighting and restarted them on antiretroviral therapy.

The team is still facing challenges, the most critical being a shortage of money. They are unable to hire the vehicles they need to reach thousands of displaced people who are camping outside of Nimule and who have almost no access to HIV services.

But Ondiek said there is no shortage of people like Anywur who need their services in the communities they can reach.